“You like to be independent, but you will need to learn to ask for help. It doesn’t make you weak.” ~ Taya Kyle

I wanted to write about something new but I have been so preoccupied. In the next couple of weeks, I will begin taking the MS drug Lemtrada. This particular drug is administered over several hours through an intravenous infusion. The process last for 5 consecutive days and also consist of special medical tests and monitoring. The amount of time for each infusion day varies but I was told, be prepared to stay for 8 hours.

So that means, I will have a lot of downtime during the infusion. I love to read and I plan on bringing plenty books and magazines. So I have that covered.

But there is something I need your help with.

Starting a new MS medication always makes me nervous and a bit scared. The uncertainty seems to get the best of me. This is the part where I need you.

My husband recommended I ask the MS community for some encouraging words. It can be anything. Length and content does not matter. It can be one word, a link or even a story about you.

I will not review your comments now. My plan is to wait until I’m in the infusion center before reading your notes. Hopefully seeing your words will take the edge off my nervousness and help me pass the time.

I received monthly Tysabri infusions for about two years. I actually enjoyed the time in the chair. It was away from work and a time when I could 1) be with myself and think, sometimes listening to music on my iPad, 2) get a lot of reading done, 3) take a nice nap, 4) chat with a group of folks who were going through the same thing I was. We even celebrated a couple of birthdays there.

One hint – If you want an easy “stick,” hydrate yourself well before hand. The water helps swell your veins. (At least it did for me).

wow, what a great response. it helps to ask people who understand. i did about a year of tysabri, and at each infusion, they were required to read the “black label warning” about pml and how it could kill me, without warning. but i had a friend who had used it and had an amazing response. so i listened to the warning and took the needle. it didn’t kill me, but it didn’t do anything amazingly good for me either. so after a year, i felt i had pushed my luck, and went off it. here with spms, there’s not really any meds that help. i have heard great things about lemtrada, and i hope it goes well for you!

Nicole, this is the very first time I have come on your blog but I had to post! I did Lemtrada four months ago and I have had MS for twenty four years. The very most important advice I can give is drink as much water as you can. It helps with the headaches. The actual infusions were not as bad as I had worked myself up for. The steroids were the worst, but nothing I couldn’t handle. You will do great!!! Stay positive, you can do this!! Feel free to contact me!! Much luck to you!

Hi Nicole. I live in West Michigan, was diagnosed with SPMS in April of 2012, was born in 1969, am of Dutch descent, and am a single male, divorced, with no children. My divorce was final in 06, I graduated law school in 07 and was sworn in as a lawyer in 09, it took 2 years and 4 attempts to pass the bar exam of Michigan. I stopped working at the end of 2014.

My last day of work was a jury pick. I, along with my client, was at the Defendants table. The gallery was full of about 40 potential jurors and the jury box was full too, 8-10 people. We selected what we thought was a good jury for this criminal misdemeanor child abuse case. During this process, I discovered that I use many parts of my body, from head to toe, whilst working as a criminal defense attorney. I also discovered that MS affects practically all of those parts of my body. From walking, to talking, to balance and dexterity, cognitive and optical skills, not to mention stamina and bladder issues.

After selecting a jury and waiting for the judge to descend the bench I approached His Honor and humbly explained my decision to stop working then and there. I of course explained that I would find a good replacement lawyer acceptable to all party’s involved and I did. Subsequently, the prosecutor’s office dismissed the charges shortly thereafter. That was the last time I worked. Before that, I was a waiter, construction worker, painter, truck driver and much more. My first job was an ice cream scooper at Baskin Robbins when I was about 12.

I’ve been a pretty active guy since I can remember. Rode motorcycles since I was 16. My last ride was 4200 miles and 2 weeks long, slept in the grass a few times. It was wonderful. I stopped riding when a friend of mine (a crazy guy whom I lrode with often) said he was concerned about me and my MS when he saw me on a bike. That was just a few years ago. Since then, I stopped riding motorcycles, stopped building a law practice, sold my house, moved into a one-bedroom apartment and spend all day every day managing my condition known as MS. Now if you wanna join the many other people in my life who think I coulda/shoulda/woulda… something, well, just don’t. I like you.

Shortly after diagnosis I discovered MS bloggers, like you. There were a lot of them. I started following many of them. I have shared your concerns, prayed and thought about you (and many others.) When I read that you were looking for help from us it was really an automatic motion to start writing. Best of luck with Lemtrada. Personally, I like Dr. George Jelinek and the OMS (Overcoming Multiple Sclerosis) program. Take care, stay strong and I will do the same.

Hi Nicole Wow the feedback is amazing I too am on a new med, This will be my 3rd time. My Nuero asked me to try this and to please be patient with him. His goal is to put me in remission. I am so hopeful that this is possible. aside from that; just wanted to say that I am so happy that you are willing to try this new med. This might be the one!!!! We are all in your corner routing for you. Wishing you much success. Please keep us posted. Take care

You are a rock star!! I’ll begin Lemtrada this coming Monday. It’s scary, but I’m hopeful and rely on God and the prayers of family and friends. You’re getting lots of those!! I would encourage you to grab a Bible and read the Book of Luke. Pray, meditate, ask God to strengthen your faith. He promises that all you need to do is ask.

I am praying that you do well on this new medication . I hope you take some time to reflect on the positive impact and the many people that you inspire all the time. My new normal is having such a positive impact on many lives in the ms community. You enlighten me.God bless you.

Praying earnestly that this medication will improve your life dramatically!! I think we are all waiting breathlessly to see your well being enhanced in a powerful way! May your time “In the wait” while this drug is being administered be peaceful and profitable by reading all of these beautiful and encouraging Messages. Anxiously waiting for your positive results, Ann

Hey Taya I wanted to let you know I have taken the medication you are going to be taking. The infusion didn’t have any side effects for me unless you get insomnia like me from the IV steroids they give you. I was given the steroids for the 5 days of infusion. I asked for a sleep aide during those days I knew I would need them. They will also be giving you Benadryl IV push before you get the Lemtrada or when they start the steroids. I don’t remember as this disease has stolen my memory so this drug will be the miracle drug I hear so many people tell me about. I know it is only supposed to be a medication that stops the disease progression but I read stories. If you can get in touch with Glenn Scott as he was one of the first to get the drug and it totally reversed his MS. I’m praying it does the same for you and for me.

I received the Lemtrada Feb 29th – March 4th of this year .
Good Luck and keep positive. The Lemtrada community is very supportive.

I’m sorry I don’t know where I got the name Taya from. I misspoke.
Hey Nicole. I need to continue reading your blog as you are an amazing person who I admire and strive to get back to. God Bless and you can always find me on here if you ever want to talk about what you are going through. My name is Vanessa Incammicia

Hi Nicole! It’s going to be okay. Somehow, some way, it really is going to be fine. It won’t be fun, but hang in there and you’ll see – it will be okay. And until it is, you hold on some more and just wait for the moment when you can say “Ah, she was right, it is okay now”. Hugs!

Good things about infusions:
– You are resting. It can be so hard to take the time to give our bodies the rest they need. Your body and mind will be nourished by the rest.
– Isn’t it great to have time to sit and read? It can be hard some days to carve out the time.

You are taking care of yourself. You made a conscious choice to do something to take care of yourself. You are taking control when dealing with a disease that takes away control.

You are powerful. You’re not just saying, Do whatever you want, MS,” you are fighting every step of the way.

I’m sending you hugs and prayers. I’m also admiring you for taking this giant step forward and trying a new approach.

Dear Nicole ,
Here is a quote from a really fine man who had some real struggles, he liked this and didn’t know where it came from
“To be brave is to have courage
When you are feeling faint.
So you can only be brave
When you really ain’t.”

Hi!, I think this new medicine sounds exciting. Why? Because when I was diagnosed in 1990 there were no medications except Interferon whch I didn’t like the name of. And I didn’t believe I had anyhting wrong with me as whatever it was went away and left no mark, not to return until I was once again exposed to solvents from the printer ink I used at my teachiing job in Japan. The photocopier was kept in a small windowless room and you had to watch over the copy machine or another teacher might come by and stop it so they could print what they needed. Fumes in an airless room which most people weren’t effected by. Except me.Ten years later I found out I was not alone, but had solvent toxicity poisoned ms friends in Scandinavia: http://www.ncbi.nlm.nih.gov/pubmed/8153592 The original link I found was dated 1939 from PubMed, but that link mysteriously disappeared a few months later. I never took any MS medication as I still didn’t think anything was wrong with me. And in the early 1990’s there was only that one. However after a number of concentrated exposures (they all were) that’s all it took to change from serious allergic reponse to become ms. If I had known I would have quit my lovely teaching job and found another one. Ah, hindsite! My neuro had never heard of this allergy as it wasn’t part of the educational box he lived in. He’s a nice man, intelligent, but ignorant. Ms never got in my way outside of the three week horrible allergic reactions. Then menopause came and went and after five years a gentle secondary progressive emerged. On that note I will bore you no longer and go to bed – it’s getting late. Thanks for reading! Take care Nicole! Wishing you all the best with your new medication.

Wishing you all the best on this new phase of your journey. You have been a source of encouragement to so many people, and I hope you know that we are sending all the encouragement right back at you! I know that you will be able to handle whatever this “new normal” throws at you, and I hope that you see the most positive results possible.

Nicole, whatever the sacrifice or discomfort, keep your eye on the prize. And the prize is your health. Be aware we stand with you and wish you well as you go through this. You have given so much to all of us. Now it is our time to give to you. As you can see, there are many willing to do that. God bless you.

I wish you the best of luck with the new medication. I read your posts and I see myself in them. I am so grateful for your words and show them often to my husband. I look forward to every post, every story you have and different ways to be yourself with MS. When I am sad and scared and feeling alone by what’s happening inside my body I have thought of you and how you have dealt with the same things. That there are others out there and I am not alone. Thank you for being an inspiration to me and so many others.

Nicole,
The Goodness of God by Randy Alcorn is a incredible book about suffering that has helped me understand . Wear your bracelet that says “I can do all things through Christ that strengthen me. Philippians 4:13. I will be praying for you and Wishing for the best results. All to Jesus, I Surrender, All to him I freely give. That is a soothing hymn that lets us release our fears and trust in him. We all love you and are thankful for your blog!!. God Bless You

I too am starting a new MS medicine and spent most of the last month very scared because the reason I am changing is because I got melanoma. The treatment for it is generally the opposite of the treatment for MS. My MS medicine was effective for me for the last five years and it feels like I’m stepping off a cliff to go off it, but I have to get my Tcells back to fight the melanoma.

I am so blessed that the cancer has not spread — they did a high tech dye test and took two lymph nodes to be sure. So I am not facing oncology, just new MS drugs that I hope will be as effective as the last round.

So I am with you in your worries and hopefully also optimism. Sometimes new things can be better, and I’m praying for that for you and for me and all of us that struggle to manage chronic disease. Stay strong and keep hopeful!!

Hey, Laurie! It does seem M.S. would be enough to deal with, I;m sorry you had skin cancer to boot. I love this quote from Oswald Cambers, : “When Jesus asks us what we want Him to do for us in regard to the incredible thing with which we are faced, remember He does not work in common sense ways, but in supernatural ways,”
I pray you will recognize the supernatural in life, in your life.

Hi. I am in an infusion room as I write this. Not for me though; it is for my son. He started chemo in June , 2013. He is done now. Almost a year into remission. This is a monthly recheck of his labs. They are on the lookout for a relapse. I am on pins and needles every visit, praying they do not find one.

To add to the anxiety, they alerted me to the recent discovery of MS type spots on his last mri. They just wanted me to be “aware.” Aware. That my eleven year old may face MS after cancer. Ah. Aware.

I miss the days when my MS was my big medical concern. It sucked but it was mine. I can handle mine. His? So much harder.

That is my story for today.
I will pray that tomorrow is better for both of you and everyone else in an infusion room.

Please keep us posted on your progress through the infusion. I hope the best for you during and after starting the new med. I also hope you recieve tons of encouragement from everyone. I would like to thank you so much for your blog. It helps me so much. I wouldn’t wish MS on anyone, but there is so much comfort when another person can describe (in detail) the emotions you are feeling. I have actually forwarded some of you blogs to my family to help them understand. I want you to know how much your words comfort me. Some days it’s almost like you are reading my mind. Thank you so much! I hope you see lots of improvement. All my best!

You got yourself to the latest treatment. You have a history of excelling as you get yourself to each taxing moment of simply being alive. Weird medical crap ain’t nothing to compare to the challenges of simply being alive… which you are already good at. Listen to music you like! Laugh! Laughter is better medicine than any of that intravenous stuff, so dose up!

You rock my friend and you’ve got this!!! You willingly bear your soul to help others understand all aspects of MS and to inspire them. You inspire me!! You are filled with strength beyond measure, more than you know.

Sending hugs, prayers and a strong positive belief that this new medication is going to be freaking awesome! If it’s a tenth as strong as you are it will go amazing things…

The good thing about Lemtrada is that—for most persons–they need only ever experience two (2) courses of infusions. I recently met a young man who had been through one (1) course and he was very positive about the experience and the effect of Lemtrada on his MS.

Be strong, think of all you have been through up to this. You have come through a lot.

Nicole, your journey has been difficult & fraught with frustration and fear, and brought you insights and inspiration. You’ve always been honest, open and frank about what is happening to you. It has given you a lifetime of experiences in a few short years.
My prayer for you is that this new step brings you more life & light and hope for your future, and ours!
Big hugs, hope you’re feeling all the love!!

I failed on two other DMTs this infusion saved my life it has brought back so much that I had lost and I believe that it is the problem solver!! Just be careful because I thought that I was perfectly fine when I got out and I went to harden ended up wearing my body down soon take it easy regardless of how good you feel. This year I finally had an MRI with no new disease progression which is never happened to me since being diagnosed with MS

Nicole, my prayers are with you. You are very brave to be doing this. You truly have a fighting spirit. I pray that this stops and even reverses your progression. When times get really trying, I am always reminded of the song “You’ll Never Walk Alone” from the musical Carousel.

last weak my doctor talked about changing my medicin. I have been on Tysabri for ten years and it has been my “very good friend”. So I felt quite sad about that I now have to change medicin. I have that jc virus that is the cause of PML and my jc values are now to high. I have been making fun of that the only side effect with Tysabri is that you can die (ha ha ha). But suddenly it´s a reality and it´s not fun at all. My doctor talket about the medicin you are now taking and also about Mabthera, which is a medicin against cancer. I feel very secure with my doctor and when he suggested the two medicins and talked about the side effects, I felt secure about either of them. Altough am sad to say goodbye to Tysabri I´m sure that it will be good. I decided to take Mapthera but I could just as well decide to take your medicin and feel just as secure about that. So have trust, it will all be good. I will think about you the coming days. Thoughs are strong, I´ll be there with you.

Nichole, you’ve helped me in so many ways for so long, I could never pass up the opportunity to try to send you some hopeful words. And how apropos that I find this request this very morning because I do have something to share. Every morning I listen to the birds sing their serenade to wake up the sun. This morning it was preceded by a trumpet tribute, a thunderstorm. And my son sent me this picture from his drive to work taken about 5:00.
Stay strong my friend

I have faith in you! I’ve been following your blog and I love it! New drugs are so scary! But knowing what I do about you, you did all of the research and are prepared. You’ve got this! Enjoy your book! What are you reading?

Nichole, you’ve helped me in so many ways for so long, I could never pass up the opportunity to try to send you some hopeful words. And how apropos that I find this request this very morning because I do have something to share. Every morning I listen to the birds sing their serenade to wake up the sun. This morning it was preceded by a trumpet tribute, a thunderstorm.
Stay strong my friend

Nicole,
this is great news. I am psyched that you have been offered Lemtrada because it has a great record for turning this monster around. I hope this time your ‘new normal’ will be one that makes you smile and doing better. hugs, Laura